I’m new here, thankful to find people who’ve been through this and willing to share what they’ve learned.
I was diagnosed with PCa on November 11, 2017. PSA 22.3. Biopsy revealed Gleason 4+4, 7 of 12 cores positive. Bone scan revealed metastasis to left inferior pubic rami.
I have a dull ache in my perineum and pain in my left sit bone, mostly tolerable without any pain meds, but worse at night.
I’m currently talking to urologist at Stanford and radiation oncologist at UCSF. Doc at UCSF’s initial recommendation is that I go on ADT for a couple of months with Lupron, Zytiga, and prednisone followed by radiation. They also want me to do a PSMA scan before beginning treatment. I may be able to get in a clinical trial (https://clinicaltrials.gov/ct2/show/NCT02981368) to avoid the cost (not sure insurance will pay). They put me on Flowmax to reduce my nocturia. Just started, but seems to help.
Meeting with urologist from Stanford tomorrow for another opinion. Also asked UCSF for referral to integrative oncologist and have appointment in January with UCSF med onc.
Grateful for this forum. I’ve been doing a lot of reading and research, but it’s overwhelming. I know my PCa is advanced, but would love to try any alternative approaches that might be effective before I go down the path of ADT or radiation.
I’d welcome any thoughts or advice, or any ideas for direction to take to help me wrap my head around this.